Three years ago, I spent my spring break out running a pandemic and flying to Boston for a fateful second opinion on my health situation. At the time I was frustrated with the care I was receiving at the clinic I had been with for 10 years. The doctor I had been assigned after my prior doctor passed away and I did not click. I was not the kind of patient she preferred to work with and she didn’t seem to have a deep knowledge of the things I needed addressed most. I don’t blame her, her passion was more in cardio obstetrics and I had no desire to reproduce, we were a bad fit, the clinic had a hole to fill and they tried to put a square peg in a round hole. The issue being it wasn’t a picnic to be the peg or the hole in that scenario and in the end I felt my care and my health were suffering. 

Arriving in Boston I don’t know that I had anything in particular that I was hoping to hear other than, my symptoms were real, and my current care plan (or lack thereof), was not benefiting me. Aim low, and you will rarely be disappointed folks! My appointment with Dr. Fred Wu, was amazing, and yes I am using his full name while I left my previous doctor out of this because I believe praises should be sung loudly and often and complaints are best for mumbling to yourself or boring your close friends and family with. (Especially if you’re pretty sure it wasn’t so much an ability thing as much as it was a personality thing, sometimes doctors and patients don’t click and that’s ok.) He spent over an hour with my sister and I discussing my chart and reviewing recent testing I had done. His overall opinion – I was correct in feeling that my treatment plan wasn’t ideal and I was declining in health. Enter his college friend and local recommendation, my current ACHA doctor Dr. Shane Tsai. Also named, also because I like him. 

This spring break, three years later, I am once again spending my time doing medical appointments. In fact, I am doing four nearly full days of medical appointments and testing. After doing what he could with where I was Dr. Tsai referred me to the heart failure and transplant team, and at our last appointment as you may know it was decided that it is time to have the complete work up to see if it is time to really, for real, list me for a heart transplant. When they told me it would be four days of testing I thought surely they were exaggerating, I thought they must be preparing me for the worst case scenario of scheduling. That is not in fact the case, they said it would be four days of testing and appointments because that is exactly what it is going to be. So many appointments and they are going to look at everything from head to toe. I have 52 different blood tests you guys! 52! I didn’t even know there were 52 things in my blood. To paraphrase the adorable Andy Dewyer from Parks and Rec, I am going to get my ankles microwaved and all my blood taken for science. 

The upside, my whole family will be hanging out with me while I shuttle from ankle mirowaving to blood letting. They will take turns, or double up, etc. through the week, cook for me while I rest in the evenings, and in general keep me entertained while we navigate this giant gauntlet of the unknown. My mom is bringing us gramma cookies, and promises to make me chicken and noodles. It ALMOST makes the fact that I have to collect all my urine for 24 hours worth it. Almost. That is going to be a real treat. 

Last week, I had a heart cath. It was actually one of the easiest and dare I say darn near enjoyable heart caths I have ever had. I really loved the doctor and I was able to have light sedation, be accessed through my neck, have a sandwich and cookies as soon as I was back in the room. All that and I got to go home within two hours! The findings weren’t surprising and weren’t altogether great. My heart failure is progressing. No one thought it would hit the pause button so it wasn’t shocking. I am unsure if the rate is surprising or not, that is something we will talk about next week. As I have said a million times in the last few weeks, you don’t get this far along in this process because you’re doing fine. Sometimes it is weird to think I am as sick as I am. I absolutely do not see myself as a sick person. I wake up every day and do my best to push myself out of bed, and through my day. I want to be as “normal” as I can be. My doctor has remarked more than a few times that most people who are this far in the process aren’t still attempting to work. So take that expectations. Spite is a powerful motivator. 

I will update next week as I can and feel up to it. It is really going to be an undertaking. I think I am ready for it mentally, but physically it will be more demanding than I usually put myself through which often impacts my state of mind. Stay tuned on my socials (ugh did I just say that) if you want to know what is up. I doubt I will be writing any blog posts, but who knows maybe I will be inspired. Thanks for all your well wishes and kind thoughts. Until next time.